Had pain in hip for a year, bone cancer discovered 3 weeks ago

Joan M
Joan M Member Posts: 409

I haven't been on the forum much lately due to stressing out over many new developments. 

I learned 3 weeks ago that I have a "lytic bone lesion" in my lower pubic ramus - at the part of the bone that hits the chair when you sit.   A lytic lesion eats away at your bone, so it looks like Swiss cheese and makes your bone brittle.  Colon cancer causes this type of lesion in bones if it goes into your bones. I causes pain because it also gets inflamed and puts pressure on tissues and nerves, according to my doctors. 

It took longer to diagnose because of a 3.5 year old injury to my left hip, we never suspected the pain was from cancer. 

I had doctored for the hip pain when I was first injured, but got tired of going to doctors since I have so many oncology appointments.  However the pain got worse after driving home with my mother from MD Anderson, she lives in Texas and comes north for the summer.  The road trip aggravated the area and caused extreme pain. 

I have had pain off and on for past 3 years, had xrays and physical therapy, had neurological and muscle function tests and the doctor said all those tests looked good.  She finally ordered an MRI since it hadn't healed.  The MRI showed abnormal  bone marrow signal in the inferior pubic ramus and suspected cancer, so ordered a PET scan.  The area lit up to an 8.9 on the PET compared to 3.1 in the old lung tumors that are almost dead.  Last summer they saw a lymph node on the CT scans that still measures 7.7 on the PET, but they never saw the cancer in my bone until the PET a few weeks ago.

I met with  my primary oncologist Thursday, May 16th and also saw a local radiologist who said the only way to treat it is with radiation.  He said I needed 5 to 10 treatments every other day, and could very likely have some damage to my rectal area and bladder, possibly vaginal damage, and maybe sunburn on my skin where the radiation entered.  I asked for a referal to Mayo for proton beam therapy since it's supposed to be so precise and not go through the tumors to other tissues. 

Mayo scheduled me for the following Monday for tests and I saw several doctors there all day Tuesday.  The radiologist at Mayo said proton beam therapy is harder to control than isotopic photon therapy that he referred to as IBRT.  He said I would not have any damage to surrounding tissues because he would use several angles so that the tumor would get the full dose, but surrounding tissues just a small fraction and would have none or very minimal damage. But that I could have a spike in the pain for days or even a week.   He also said that one treatment at 24 gry (cGy ?) is as effective biologically as 5 at 10 Gry.

He was able to get the simulation done Tuesday afternoon and scheduled radiation for Thursday.  I was very nervous because I've heard of all the problems others have had from radiation and almost backed out.  He showed me the picture of all the angles he was shooting  from and explained things to me so I wasn't as nervous.  I had taken pain meds right before the radiaion and didn't feel a thing.  The pain spiked for a couple of days and then got better.  I have just been taking NSAIDs the last several days because I need to drive and the pain is almost gone.     I did not  have any burning on my skin. 

I was so nervous after finding out cancer was in my bone, and more so because we all thought it was a new lesion, however I firmly beleive it developed over the several months I was off chemo for various surgeries and medical procedures from September 2017 to June 2018.  The pain over the last year has been in the exact same spot ,  whereas before that it was more in the hip joint area.  

Everything went so fast once it was diagnosed that I was almost in a state of shock.   The reason Mayo got me in so quickly was because my oncologist  there was pulling strings to get me in and get the treatments done as soon a possible.  Radiology didn't have any openings until June 17, but saw me May 21 and performed radiation treatment on May 23.   

I was extremely busy with my family the past month too because my son just turned 18 and also graduated from high school, we had to postpone his graduation party until next week because I've been too stressed and was really tired from the radiation.  

And we're also taking care of my mother in law who is in a wheelchair. So yes, my husband and I have a very busy household, with 2 teenagers, and both of our mothers living here and other children and grandchildren  visiting often, as well as friends and kids friends stopping over regurlarly.    

It took me awhile to calm down.  I'm doing better since graduation is over but stressing about preparing for a graduation party for 50 to 100 guests - you never know who will actually show up so prepare for more, and maybe fewer will come than expected right?   A few family members have agreed to help clean house and do yard work.  I wouldn't be able to do it without their help. 

BTW:  My oncologist at Mayo also ordered a biopsy of the lymph node to see if I am eligible for targeted therapy, or if my cancer had mutated.  The biopsy was performed via bronchoscopy last Wednesday, but that there were not enough cancer cells to do the TEMPEST test so he is using stored tissue from my colon tumor to see if I can get targeted therapy at Mayo.  MD Anderson had performed a biopsy on one of my lung tumors for a trial there but also did not have enough cancer cells to do the TEMPEST test, so apparently the Folfiri is kicking this cancer's butt!

I wanted to share the information about my new bone lesion hoping it may be helpful to someone and am happy to answer any questions under this post, or you can send me private message. 

God has been good to me and has kept me alive for a reason, and relatively pain free except for this hip thing and a little arthritis.  

 

Joan  

  

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Comments

  • Trubrit
    Trubrit Member Posts: 5,626 Member
    Phew!

    That was a hard read.  I am so sorry you have been going through so much, and we haven't been here to support you.  I can imagine the fear, heairng about yet another Cancer.  How blessed you have been, to have had treatment so quickly.   I do so hope that the radiation knocked the socks off of the bone Cancer, and that you find out the lymph node can be dealt with quickly as well. 

    Congratualtions on having a son graduate.  Please, try your bestest NOT to overly stress about this graduation party. I'm sure at the end fo the day, your son won't care if you just had a BBQ in the back garden.  Make it as stress free as you possibly can.  Stress + Cacner are boosom buddies. 

    Tru

  • Kazenmax
    Kazenmax Member Posts: 458 Member
    Oh my

    Gosh, Joan, that’s a lot! How wonderful that you were able to get the therapy that you need. Sending you love and strength to get through. 

    k

  • JanJan63
    JanJan63 Member Posts: 2,478
    Oh my goodness, I don't know

    Oh my goodness, I don't know what to say. I'm so sorry for this latest development. It just never seems to end, does it. I hope the radiation is effective. Interesting about the proton beam therapy, I've never heard of it.

    Best of luck with this!

    Jan

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,262 Member
    My sympathies

    What a situation!  And then life seems to come along to compound it, one generation graduating and another aging. It sounds like you are getting good treatment and I wish you all the best success with it.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    Wow

    Sounds like a lot going on and I'm sorry that they discovered this.  Hoping that this new treatment kills all the cancer and you can be free from pain.  Congratulations on your son's graduation.  Try to let someone else do all that work - that's the last thing you need is to be stressed about a party.  Have a good time at it though and try to enjoy.  Wishing you well.

    Kim

  • Butt
    Butt Member Posts: 352

    I perhaps missed something in the post. It sounds to me you are not talking about bone cancer but a met from a colon one. I also had a whole in my bone from a colon cancer. PET showed it right away. 1o radiations in that area to heal it. Butt. 

  • Joan M
    Joan M Member Posts: 409
    edited June 2019 #8
    Kazenmax said:

    Oh my

    Gosh, Joan, that’s a lot! How wonderful that you were able to get the therapy that you need. Sending you love and strength to get through. 

    k

    Stress/cancer connection

    It seems like many people develop cancer during a period of time when they are under a great deal of stress.  And then find out they have cancer which causes them to stress even more. 

    The researcher I met with at MD Anderson is studying this connection and had a few questions on the survey regarding stress levels before and after cancer diagnosis.  It will be interesting to see if she publishes anything regarding that.  

    I am doing his party at home and yes, a few relatives will help me prepare.  We will have some food and hopefully yard games if the weather cooperates.  And I'll take my xanax a bit more to get through this.  I've been really crabby lately from all the stress.    

  • Joan M
    Joan M Member Posts: 409
    Yes it was metastasized

    Colon cancer eats at the bone and causes small holes at first, like Swiss cheese.  It also causes the bone to be brittlle. 

    My oncologist is putting me on Zomata to help strengthen the bone.  

  • Joan M
    Joan M Member Posts: 409
    edited June 2019 #10
    Thank you all for your support

    It means alot to know people understand.  

    My husband always knew he would be the one to care for his mother, but didn't think it would be so soon.   She just turned 80 and suffers from clogged arteries and had surgery to re-establish blood to her legs. She developed gangrene in her right foot, and the doctor said she may need amputation on right leg anywhere from foot to below the knee.  Yesterday he said it is healing well and doesnt believe she will need amputation. She requires some help with getting her food and coffee, putting my old waitress skills to use.  Also needs to have iodine put on the sores everyday and help showering.  She's had a home health aid help with the showers and my husband has been dressing the wound since I am on chemo and not supposed to have contact with bodily fluids, etc.  At least according to my doctor.  

    My mother is 76 and is a great help with cooking, housework and even babysits for the little great grandchildren, and helps me care for my mother in law. She's a great help!  

    Not trying to complain, even though it may sound that way.  Just adds to the stress level. 

  • Msboop15
    Msboop15 Member Posts: 83 Member
    Sorry to hear your news

    sounds like you went through & are going through hell. Kudos to your oncologist for pulling strings at Mayo. Sounds like he’s a “keeper”. 

    Sending hugs & good thoughts...

  • myAZmountain
    myAZmountain Member Posts: 417 Member
    edited June 2019 #12
    Proton beam therapy

    So sorry to hear you are having to deal with so much stress and this bone met! I am fascinated by the proton therapy--were you at Mayo Rochester?  I have yet to find anyone that can give a clear cut criteria for when to use it. Praying that things will get better!!

  • Joan M
    Joan M Member Posts: 409
    Yes I was at Mayo in Rochester

    The radiologist there said it was harder to control than other forms of radiation.  It is mostly used for brain tumors and is also used in prostrate cancer.  I went to Mayo because I was convinced I needed the proton beam therapy to avoid damaging any surrounding tissues.  

    My doctor used "photon" radiation and also used the term "Isotopic".   It says "photon IBRT" in my records if that means anything to you.  The doctor at my home clinic was going to use SBRT.  I don't understand the differences between all the forms of radiation.  

    Thank you, I am feeling better today.  

  • Ruthmomto4
    Ruthmomto4 Member Posts: 707 Member
    Joan

    what a wild ride you continue to have! I am so happy to hear they were able to help you so quickly. You certainly have a lot going on! My Dad had the surgery on one of his legs your mother in law had. It helped him but he refused to do the other leg. I hope things calm down and go smoothly for you for a long time!

  • Joan M
    Joan M Member Posts: 409
    I made it through graduation and party!

    My son's graduation party went really well!  We had about 75 guests or maybe a few  more.  Everyone seemed to emjpy the party, and had fun visiting and playing yard games.

    Things should calm down for awhile, then get my son ready for college.

    I took a short break from chemo - like a week or so extra just because of all I had going  on.  Just didn't want to be sick during this time, and I needed the energy to get through the last month.  I start back on chemo tomorrow. I really dread the chemo days.  Trying to convince myself that I won't get sick this time.... an attempt at using psychology to get through the worst part.

    Thank you all for the support! 

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,262 Member
    Joan M said:

    I made it through graduation and party!

    My son's graduation party went really well!  We had about 75 guests or maybe a few  more.  Everyone seemed to emjpy the party, and had fun visiting and playing yard games.

    Things should calm down for awhile, then get my son ready for college.

    I took a short break from chemo - like a week or so extra just because of all I had going  on.  Just didn't want to be sick during this time, and I needed the energy to get through the last month.  I start back on chemo tomorrow. I really dread the chemo days.  Trying to convince myself that I won't get sick this time.... an attempt at using psychology to get through the worst part.

    Thank you all for the support! 

    Congratulations

    Congratulations on a successful party and best of luck facing the upcoming challenges.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    Joan M said:

    I made it through graduation and party!

    My son's graduation party went really well!  We had about 75 guests or maybe a few  more.  Everyone seemed to emjpy the party, and had fun visiting and playing yard games.

    Things should calm down for awhile, then get my son ready for college.

    I took a short break from chemo - like a week or so extra just because of all I had going  on.  Just didn't want to be sick during this time, and I needed the energy to get through the last month.  I start back on chemo tomorrow. I really dread the chemo days.  Trying to convince myself that I won't get sick this time.... an attempt at using psychology to get through the worst part.

    Thank you all for the support! 

    Party

    So glad that the party went well and don't blame you for taking time off for the party from treatment.  My daughter was in the Army stationed in HI when receiving treatment and waited 3 weeks because spending time with my daughter and new granddaughter was more important than treatment.  So glad you had some time off and good luck in the upcoming treatments.

    Kim

  • Twinzma
    Twinzma Member Posts: 236 Member
    Well snap

    Actually have another "S" word in mind, but I will keep it clean. Joan I am so sorry honey that you are now back in treatment. But way to go, throwing a party like that! And congratulations Mama on your Son's graduation, I bet you are so proud! I hope that all goes well and you can find Nedsville very soon. Hugs!!! 

     

  • Joan M
    Joan M Member Posts: 409
    June was the craziest month!

    I haven't been on the forum much or other social media most of the month. I've had some really good family times this month, and some stressful, and some very sad.   There's been alot of fun times, and a crazy/busy month with alot of friends and family visiting, my grandchildren staying over, Bike rides, motorcycle rides with my husband.  

    Then I had some health problems for me with severe pain and weakness in my left leg possibly caused from the radiation?  More likely though from all the housework and yardwork in preparing for the party.  and helping one of the boys clean for apartment inspection and lease renewal.  I really overdid it.  

    To the point of collapsing, having severe chills, and high fever (103.5), and ending up in the ER and hospitalized in ICU with tachycardia, exremely low blood pressure (80/40), and low heartrate (<45), low magnesium, low potassium, and left brachial bundle branck block(not even sure what that means!?)

    My mother in law had similar chills and high fever a few days before me, but the doctors had no explanation  for what caused it the fever and chills for either of us.  All tests for bacteria and viruses have been negative.  My doctor ran the tests for 7 days, and all remained negative.  I had a CT scan to check for any pockets of infection, and they could not see  anything to explain the cause of my symptoms.   

    I have been trying to enjoy myself anytime I feel remotely up to it.  

    June 2nd, my son graduated.  June 9th we had his graduation party, June 16th, celebtated Father's Day,  June 18th, my mother in law went into the hospital.

    June 21st I was helping my 24 year old, and he had to bring me to the ER, and I ended up in the hospital all weekend.  That same night he went with his friend to a casino at an Indian reservation and his car was stolen.  He and his friend were stranded with no hotel rooms available there, and spent the night looking for the car and talking to police who really didn't seem to care about his car.  June 22, He ended up in the hospital from depression/suicidal thoughts.  I got out of the hospital on June 23 and then he got out a couple days later.  We had to make another police report and get the vehicle listed on a statewide data base.  The car was found and we had to wait for police to process it. It had a flat tire, keys were lost, and some other body and interior damage.  We tried going to get it but couldn't make it to the town it was found when the tires shops were open so had to wait until Monday.  We finally got the car, and although driveable, had a lot of damage both inside and out.   That was a very traumatic and dramatic weekend.  We've been dealing with insurance issues, and the car may be totalled due to the damages.  

    June 30th, more drama this time with my 18 year old who just graduated decided he wanted to move out but does so by pulling teenage disrespectful crap.  I was so upset and just felt like complete crap.  But decided to pull myself together and go to the lake with my husband, daughter and grandkids as planned.   So we ended up having a really good time.         

    The next day my 18 year old comes with us to get the car, and is very respectful and apologetic. 

    Reflecting on the events of the month, things were more stressful after I got out of the hospital, so it wasn't stress that put me into the hospital.  Just not sure what it was.  One theory is possiblr interactoins with medications:  I had chemo one week.  The next week I had problems with allergies, and the doctor put me on zithromax although I didn't have an actual infection.   The next week, I went on prednisone for the injury to my leg. I saw my cardiologist on Tuesday and had an echocardiogram  and everything was okay with my heart.  That Friday, I went into the ER and was put in ICU due to tachycaridia and low heart rate, etc.  The next day on Saturday, I felt 100% better, but was kept in  hospital until Sunday and my heart was doing fine.  It just doesn't make any sense.       

    One weekend I'm in the hospital, and the next I made it out on the lake with the jetski.  This weekend, celebrating the 4th of July with my family.  My grandaughter said "This was the best 4th of July ever!"  and I agree - we had a blast!  It's my husband's favorite holiday and I really love watching him light off fireworks!

    My mother tells me I need to slow and down and rest.  I get sick and tired of being sick and tired.  Life is too short!

    Collapsing like I did, made me realize how quickly my own health can change. 

    My 24 year old's mental health problems and suicidal ideations, caused alot of heartache as did the 18 year old's disrepect.  Both are doing well today.  Tomorrow could be entirely different.  

    Hope and pray that these kids will pull themselves together.  

    I want to enjoy each day of my life.  Even if I spend it in a hospital because I'm sick or visiting a relative, or dealling with kids who just don't appreciate me.  Although it was stressful, I learned alot this last month about taking one day at a time, enjoy the good days, and on the bad days push through it and deal with the drama, then enjoy what tiime you can.          

      

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    Enjoying Life Daily

    Enjoying life daily, is just that, daily.  It's hard because you never know exactly what to expect day to day.  It surely does sound like June has been filled with a bag of mixed emotions, tribulations, and elations.  When you aren't feeling well it tends to even be worse as you are dealing with not only your issues, but others as well.  I'm glad that you are out of the hospital.  Hopefully things will settle down in July and you can enjoy your summer.

    Kim

  • Joan M
    Joan M Member Posts: 409

    Enjoying Life Daily

    Enjoying life daily, is just that, daily.  It's hard because you never know exactly what to expect day to day.  It surely does sound like June has been filled with a bag of mixed emotions, tribulations, and elations.  When you aren't feeling well it tends to even be worse as you are dealing with not only your issues, but others as well.  I'm glad that you are out of the hospital.  Hopefully things will settle down in July and you can enjoy your summer.

    Kim

    Thank you Kim

    So far July is going better.  We had fun with fireworks on the 4th and also went to the lake on Saturday.  

    Things seem to be settling down at home. My mother in law is in the nursing home.  My mother has been dating and visiting her new boyfriend on weekends.  24 year old has his car back and found a new girlfriend.  My 18 year old is working.  7 year old granddaughter spent a few nights with us and is back home with her mom.  I'm looking forward to some time for myself.